The most awful decision a parent can face

It has to be the most difficult situation any expectant parent can find themselves in - being asked to terminate a pregnancy because of a rare congenital disorder. Where would you turn? What would you do?

It started with a routine ultrasound

The story of Faith and Hope started in February of this year when Renee Young and Simon Howie, of Tregear in Sydney’s west, went for a routine ultrasound. Having had seven children before, they were familiar with the pre-natal routine and had no reason to believe there would be anything different about this scan.

Renee was 15 weeks and two days into her pregnancy when the ultrasound revealed that the twins she was expecting were in fact only one child with two legs, two arms and one body and all its vital organs, including a strong beating heart. But above the neck there were two faces on one skull, an exact duplication of eyes, nose and mouth, and two brains connected with one brain stem.

Rare disorder

This extremely rare congenital disorder is known as craniofacial hyperhidrosis or diprosopus and occurs when the embryo fails to split in the early stages of pregnancy.

Renee and Simon were told by the doctors told to terminate their unborn baby “because it would be looked upon as a freak”. But because Renee was already 15 weeks into her pregnancy she was told that if she did want to terminate she would need to give birth to the baby.

To Renee the answer seemed clear. “Everything happens for a reason,” she is quoted as saying. “I’ve still got to give birth whether it’s now, ten weeks, or full term. To me, it doesn’t make a difference.”

And her partner Simon said, “It’d be the same as being a child with autism or Down syndrome … I don’t believe in terminating the baby if it’s healthy and growing fine, and everything is going to plan.”

Concerns for the baby

Maternal foetal specialist Greg Kesby was concerned that the baby would be unable to breathe on her own and believed there was a good chance the child would not survive to a live birth but if she did, treatment could prove costly.

But, last Thursday, at 32 weeks gestation, Faith and Hope were delivered by caesarean section at Blacktown Hospital before being flown to Westmead Hospital. The girls have defied all odds and are currently in a stable state and breathing without any assistance.

Dr Greg Kesby has warned the couple that even simple tasks will prove difficult for the twins. “There’s going to be a lot of challenges related to the way the brains developed. And that’s going to pose you a lot of problems.”

There have only been 35 recorded cases of diprosopus and of these cases, not one is alive today.

Wishing the family strength

It’s useless to blame the parents for not terminating their child at 15 weeks when she is now living and breathing, and it’s not worth pointing out how awful or tragic their lives may or may not be. We can only wish them strength and peace – not just the babies – but their parents, siblings and all the members of their extended families.

It’s almost impossible to imagine what decision you would have made if you were told at 15 weeks to terminate your pregnancy by giving birth to a baby that would not survive such an early start, but I can’t help thinking of Renee’s words: “I’ve still got to give birth whether it’s now, ten weeks, or full term. To me it doesn’t make a difference.”

It’s a decision no family should have to make and impossible to really know unless you’re in that situation, but what would you do? Would you take the advice of your doctor or would you let nature take its course?